We NEED Your Story!!

As a parent of a child with CHD or a CHD survivor, we often can feel lost in a sea of other causes. Now you can take the helm of awareness and steer it toward change, by sharing your story with your congress representatives.

Many of you have expressed a willingness to share your personal stories of battles, both those lost and won, in an effort to raise public awareness of CHD. This is an excellent way to allow the voices of our children, family members and ourselves to be heard!

In effort to provide a united front as the National Congenital Heart Coalition (watch for their new website, to be launched this week!), a Mended Little Hearts volunteer, Amy, has volunteered to create books that will be provided to congress men and women during Lobby Day 2009.

Guidelines for Submission:

1. Content and Accuracy: Emotion is a powerfully persuasive tool. So are numbers when supporting the financial hardship that can result from CHD. Please try to be accurate and describe the details of your story, and try to convey the burden faced by survivors, families and friends. Remember, the purpose is to emotionally engage the reader regarding the impact of CHD, increasing awareness and compassion for the lifelong disease.
   
2. Format: Stories need to be 1-2 pages, in a .doc or .txt format. Please check for
   spelling and grammar. Along with your story, please submit two, high quality photos, one of which is in a medical setting, such as during a hospital stay, doctors office visit or procedure.
3. Disclaimer: Please understand that your story may need to be edited to fit our standardized models and formatting needs!
   

DEADLINE: December 15, 2008

Click here to submit your story.

ACHA's Top 10 for Adults with CHD

Source: EmaxHealth, 11/8/08

Today, most children born with CHD have a good chance of living well into adulthood, thanks to research and innovation. However, the increasing adult CHD population poses a problem - many adult cardiologists are unfamiliar with the resulting heart anatomy and physiology that results from surgical repair. Adults with CHDs are encouraged to see specialists that are familiar and experienced with CHD. Check out Kansas City's Fox Affiliate for a recent health update and interview!

In an effort to assist cardiologists in their every day decisions for adults with CHD, the American College of Cardiology and the American Heart Association have jointly released a comprehensive set of practice guidelines. The guidelines—the first of their kind in the United States—appear in the December 2, 2008, issue of the Journal of the American College of Cardiology (JACC).

ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease include:

1. Given current surgical mortalities of less than 5%, in the next decade almost 1 in 150 young adults will have some form of congenital heart disease (CHD).
2. There should be enhanced education of adult cardiovascular specialists and pediatric cardiologists in the pathophysiology and management of adult CHD (ACHD) patients.
3. Practitioners are provided with logical well-conceived care plans for patients with simple (e.g., isolated small VSD), moderate (e.g., tetralogy of Fallot) and complex (e.g., cyanotic congenital heart defects) lesions.
4. Consultation before pregnancy, including genetic counseling, so that both men and women with ACHD should have a thorough understanding of the risks of transmitting CHD to their offspring.
5. ACHD patients should carry a complete medical “passport,” listing specifics of their past and current medical history and contact information for immediate access to data.
6. A formal transition process should be used to help teenagers and young adults cross the bridge from their pediatric cardiologist to an adult cardiologist.
7. ACHD patients must be informed of their potential risk for infective endocarditis and should be provided with the AHA wallet card with instructions for prophylaxis.
8. Outreach and education programs should be organized to bring patients back into the healthcare system if they are no longer receiving appropriate care and follow-up.
9. Health care should be coordinated by regional ACHD centers of excellence.
10. Every ACHD should have a primary care physician
    

Source: Warnes et al ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines for the Management of Adults With Congenital Heart Disease). http://circ.ahajournals.org/cgi/reprint/CIRCULATIONAHA.108.190690

An Insurance Story

Lately we've been receiving quite a few stories from families that wish to share information that may help others. We'll now begin posting them regularly! Meet Lauren, a CHD mom who describes her battle with insurance...

I'd like to share our story. When I got pregnant with our 1st daughter I was covered by my employer's health insurance. When we found out about her heart issues - HRHS, pulmonary atresia, Ebstein's Anomaly - we were told we'd have to deliver in the lower 48 as we live in Alaska and there are NO heart surgeons here who do kids. We chose Seattle.

The Children's Hospital said I should apply for Medicaid; a lot of their kids from AK were on it, they said. I at first thought "no way" because I thought that since I have a job and insurance that I didn't need it, wouldn't qualify. We got on and were lucky we did as her delivery, 1st surgery, and all costs for her 1st year were covered 100% - including her 2nd surgery, travel to Seattle, staying there, as well as all the PT and OT services she needed. When she got to be 1, we heard about a program called TEFRA, which in Alaska also covers kids with complex medical conditions; provided they also meet a certain "level of care" threshold. She got on that and was covered until it came time for our 2nd renewal - before she turned 3. They said she didn't meet the "level of care" requirement. We said "BS" and appealed, got an attorney, the whole 9 yards. We said that she has the complex condition, and she hasn't even had all her surgeries - she still needs 1 more. Plus she takes a Heart med and aspirin, and she still needs therapy services - documented now by the school district, since she qualified for special needs preschool due to her need for therapy. They still denied us - their rationale for deciding she didn't meet the criteria??? I worked and I had to put her at a babysitter's house!!!!

So, now I am lucky to work for a large company, widely recognized as one of the best places in the country to work, so I get good benefits (thank heavens). Before I got hired, I was pregnant again, and in a last ditch effort to provide full insurance for my daughter, I applied for Medicaid again. I got on because I was pregnant. She didn't. There are 2 different income levels they use for qualifying you, and she was evaluated on a lower one because she technically already had coverage (I was a contractor for the Feds and got the barest of bare bones coverage from that). However, when I got my new job, during open enrollment, I saw that a high deductible plan covered everything at 100% after you meet the deductible. I quickly signed up for that for this year because I was pregnant, so I knew we'd meet the deductible. I also knew I would never have to pay a penny of it because Medicaid would pay all costs insurance didn't, and by the time our daughter needed a 3rd surgery, this last March, I thankfully did not have to pay a penny of it - though we did have to pay for airfare, and a token fee at the Ronald McDonald house, as well as food.

Next year, I don't know what I'll do, I just pray she stays healthy and out of the hospital.Thanks for letting me share!

~Laurel Nelson
Anchorage Alaska

Thank you for sharing your experience navigating the insurance maze, Laurel.

Do you have a story you want to share? Tips for CHD survivors or parents? Send them to us at learnaboutchd@gmail.com and we'll be happy to share them here in cyberspace!

Free Webcast on Complications of Adult CHD

Webcast, Patient Power®, to discuss
“Under-recognized Complications of Adult Congenital Heart Disease”
Wednesday, November 5th

6:00 pm – 6:30 pm Pacific
Oregon Health and Science University presents
“Ask the Experts” with Andrew Schorr at www.patientpower.info

Significant amounts of people are born with heart defects, many of them with congenital lesions. Because of new improvements in surgical and medical therapies, increasing numbers of these children are now patients in adulthood. Still, these patients remain vulnerable to dangers and complications of congenital heart disease. Join two Oregon Health and Science University experts, Dr. Craig Broberg and Dr. Joseph Weiss, as they unravel misconceptions and underline important factors for a disease that is often under-recognized. Both experts will help us understand long-term issues that commonly arise, the role of congenital heart disease in pregnancy, and heart rhythm disturbances. Tune in to hear a conversation with highly knowledgeable experts for a closer look into a condition many are living with.

WHO (FEATURED GUESTS):
Craig Broberg, M.D.: Pediatric Cardiologist, Oregon Health and Science University
Joseph Weiss, M.D, Ph.D.: Cardiologist, Oregon Health and Science University
Andrew Schorr: Host and leukemia survivor
WHEN: Wednesday, November 5th, 2008 from 6:00 pm – 6:30 pm Pacific

HOW TO PARTICIPATE: Listen at www.ohsuhealth.com/experts

ABOUT PATIENT POWER: Patient Power debuted in February 2005 and is a weekly show hosted by Andrew Schorr, eleven-year leukemia survivor, patient educator and patient advocate. The show features renowned medical experts on topics that include cancer, pain, diabetes, and heart specialists, as well as experts in clinical trials and top pharmacists. The show serves to bring patients together in a radio and Internet community to help navigate an often inhospitable healthcare system. Patient Power takes questions from callers and Internet listeners on topics such as how to find the right doctor, how to advocate for effectively, when to get a second opinion from a specialist, and how to evaluate one treatment option over another.

Become a CHD Advocate!

When you are a survivor, or a parent of a child that is or was affected by a CHD, you often feel helpless in a sea of insurance, legislation and lack of information. Many many of us never knew that 1 in 120 children born each day are affected with CHD before we received a diagnosis. And almost everyone affected wants to change that.

Many groups across the U.S. are working on providing support and comfort to people affected by a CHD diagnosis. But who is working with our legislators and government agencies to bring about desperately needed change? How can we create a better future for CHD survivors?

The answer? The National Congenital Heart Coalition. Formed just over a year ago, this coalition is the culmination of six major, US national groups' efforts to create a climate of change for our disease. We seek to create better avenues of awareness and advocacy, which in turn will lead to greater focus on research and technological advancements that will save lives through earlier diagnosis, better screening, advancements in quality of life and surgical breakthroughs. Consisting of the Adult Congenital Heart Association (ACHA), the Children's Heart Foundation (CHF), Children's Heart Information Network (CHIN), Mended Little Hearts (MLH), Saving Little Hearts, It's My Heart (IMH) and Little Hearts, this newly founded organization is already making strides in unifying our cause. Current projects include the creation of a unified message, creating a presence in government agencies who monitor CHD and distribute funds for research and, most recently, a unified effort in lobbying our government for a central registry of CHD statistics.

Lobby Day has been a significant effort undertaken by the ACHA over the two years. This year, the entire National Coalition (NCHC) is behind the effort, and YOU are invited to help us make a difference! You are welcome to attend the lobby day, which will be held on February 10, 2009 in Washington DC. Or, you may learn how to participate in your own local area.

Online registration is now open and available at: www.achaheart.org/getinvolved/lobbyday2009.php.

CHD Death Incidence in Infancy

Source: Patient Health Information, 13 October 2008

MedWire News: A significant number of babies are dying soon after birth because of undiagnosed congenital heart disease, a US study suggests.

To examine the extent of the problem, researchers from the University of California used the California death registry for the years 1989−2004 to assess data on 898 infants who died of congenital heart disease between birth and 1 year of age.

They found that, in total, 152 of the babies had a missed diagnosis of congenital heart disease. The average age at death was 14 days and more than half of the babies died at home or in the emergency department, indicating that they had been discharged from the postnatal ward. The team concluded that current screening methods are inadequate.

That's roughly 1 in 8 deaths with a condition previously undiagnosed that died at about 14 days. It is not clear that these children could have been saved if they had been diagnosed on time. Only time, and the creation of an adequate registry for CHD, will provide these answers.

This is one front that all CHD organizations, large and small, should be united on - creating an adequate survey of patients, births and deaths related to CHD, so that we can truly begin to understand this series of anomolies.

The Moral Obligation to Give Back

If you haven't yet subscribed to Adventures of a Funky Heart, (written by an adult CHD survivor and packed with humor and insight), I highly encourage you to peruse the interview he recently conducted with Amy Verstappen, President of the Adult Congenital Heart Association (ACHA) and a survivor of Congenitally Corrected Transposition of the Great Arteries. In her interview with Steve, Amy discusses her "moral obligation" to give back to the CHD community after her personal experiences as an adult survivor. Her personal story is an interesting one, but the action she has taken is nothing short of inspirational.

In the past year, the ACHA has recently joined with several other Congenital Heart Defect organizations to form the National Congenital Heart Coalition. Amy is actively involved in creating new legislation to bring much needed research and attention to CHD issues.

“I am 100% positive that in the long run we will have an integrated, high quality care system for all survivors,” Amy says in the interview. “Our really long term goal is to have a very unified system with research, a registry, a way to quantify outcomes, all the centers talking to each other, sharing information and building knowledge together...”.

Ms. Verstappen is determined to educate parents on the long-term needs of CHD patients. She tells Steve that she “...presented a pilot version of [a new brochure designed by ACHA specifically for parents] to a group of Heart Moms - all leaders of some of the advocacy groups for children - three of them told me that no one had ever told them that their child was going to need this level of care.” Amy goes on to describe some of the questions that parents of children with a heart defect should be asking.

I can tell you, as one of those moms who didn't know or understand the long term implications (I have a child with Transposition of the Greater Arteries who I was told was "fixed!"), that the information provided is valuable and too important not to take a moment to read.

I highly encourage you to take a minute and check out the latest entry at Adventures of a Funky Heart! Not only is it a great personal story of one of the movers and shakers of the CHD community, but it is also a great source of information for parents, teens and adults alike!